FH Europe Foundation convened leading scientific and advocacy organisations working in inherited lipid disorders and atherosclerotic cardiovascular disease (ASCVD) to welcome the first-ever EU Screening Week, taking place from 28 September to 4 October 2026, and offer their collective support for its implementation across EU Member States.
At FHEF’s initiative, a joint letter was sent to the Cabinet of European Commissioner for Health and Animal Welfare Olivér Várhelyi on July 17th, 2026. The letter brings together FHEF, the European Atherosclerosis Society (EAS), the Lp(a) International Task Force and the EAS FH Studies Collaboration, reaffirming their shared commitment to supporting EU Screening Week and the wider implementation of the EU Safe Hearts Plan.
Connecting European policy with practical action
The letter reflects the importance of bringing patient, scientific, clinical and policy communities together around a common European framework for cardiovascular prevention, screening and early detection.
The document highlights the strong alignment between EU Screening Week and our organisations’ longstanding work. This includes the first EU Public Health Best Practice on paediatric screening for familial hypercholesterolaemia, accepted by the European Commission in 2020, as well as the EU-funded PERFECTO and FH-EARLY projects. It also builds on the recognition of familial hypercholesterolaemia (FH), elevated lipoprotein(a), or Lp(a), and inherited lipid disorders in general, within the EU Safe Hearts Plan.
EU Screening Week provides an important opportunity to connect several major moments for cardiovascular health: FH Awareness Day on 24 September, World Heart Day on 29 September, and wider European efforts to promote awareness and detection of cholesterol, elevated Lp(a), high triglycerides and other cardiovascular risk factors.
Mobilising a broad European community
By convening this collaboration, FHEF has helped bring together complementary patient, scientific, clinical, policy and implementation expertise:
Together, the partners have offered to mobilise national societies, clinicians, researchers, lipid clinics, patient organisations and patient ambassadors. Their proposed contribution includes supporting local screening activities, evidence-based communications, registry expertise, and policy and implementation efforts across EU Member States.
The letter also requests a meeting with Commissioner Várhelyi to discuss how this combined expertise and reach can contribute most effectively to EU Screening Week and help translate the Safe Hearts Plan into concrete benefits for individuals, families, communities and governments across Europe.
Read the joint letter in full here
All Partners look forward to working with the European Commission to make EU Screening Week a meaningful catalyst for earlier detection, more effective prevention and better cardiovascular health for all. At the time of publication, the partners are awaiting a response from the Commissioner’s Cabinet.
A short note before I begin: this is not intended as a promotion of Amgen or of the Summit. It is my personal reflection on four days of meetings, discussions and learning, viewed through the lens of a patient organisation working in cardiovascular health, inherited lipid disorders, early detection and prevention.
Amgen is one of FHEF’s industry partners, and I believe that makes it even more important to be clear about the value of these interactions, but also about the questions patient organisations should continue to ask.
For me, the 2026 Amgen Advocacy Summit in Thousand Oaks “Where insights meet impact” was strategically important because it created something that is still relatively unusual: sustained access to senior company leadership, scientists, medical, policy and advocacy teams, combined with a large and diverse group of patient organisations.
More than 130 US and international organisations were represented across cardiovascular disease, cancer, obesity, rare diseases, bone health, and inflammation. The formal Summit itself took place over two days, but for the cardiovascular community our programme effectively lasted four days.
A small group of leaders of international/non-USA patient organisations began the event 2 days ahead of the main meeting with a visit to Amgen’s campus and laboratories, moving around the large Thousand Oaks site by golf carts. For someone who spends most of her time at the policy and patient end of the healthcare journey, it was useful to see some of what sits behind the word “treatment”. Amgen is a biotechnology company involved across much of the medicine-development pathway: identifying and developing potential medicines, clinical development, establishing manufacturing processes, quality control, production and supply.
The visit helped make something very tangible: the journey from a promising molecule to a medicine that can reliably reach a patient is long, technical and dependent on many different disciplines and decisions. For patient advocates, that creates an obvious question. If science, clinical development, manufacturing, regulatory work, quality and access all need to be integrated throughout the process, why should patient involvement be treated differently?
My conclusion was simple: patient engagement should not be a consultation added towards the end. It should be an active involvement and an operational part of medicine development from the beginning.
Later that day, I recorded an interview focusing on FH, HoFH and elevated Lp(a), including early detection, the role of families, prevention, partnership and what meaningful progress should look like over the next five years. There was also a small but memorable reminder of why awareness matters. I met Eliot from the filming team again, whom I had met the previous year. He told me that our earlier conversation had prompted him to have his cholesterol checked—and he did.
We often discuss screening and prevention in population-level numbers. Sometimes impact begins with one conversation.
The second day began with a global discussion involving Amgen’s medical, market access and policy leadership. The conversations covered some difficult realities: where clinical research takes place, increasing evidence requirements, reimbursement and HTA, access delays, real-world evidence, and the tension between affordability and continued investment in innovation.
What I appreciated most was hearing senior leaders clearly acknowledge that patients and patient organisations need to play a much greater role in shaping these decisions. One phrase from the discussion was deliberately provocative: historically, patient advocacy could sometimes be treated as the “cute” part of the process—useful for a website, a moving story or an event, but peripheral to the decisions that really mattered. Patient advocates in the room strongly challenged that idea. Today, many patient organisations combine lived experience with research, policy expertise, health economics, registries, real-world evidence and implementation knowledge. In our own work at FHEF, this evolution has been very visible. The Q&A also became constructively uncomfortable. Advocates challenged why known barriers to women’s participation in cardiovascular clinical trials continue to exist. If the barriers are understood, representativeness should increasingly be designed into recruitment strategies rather than explained after a trial has finished. We also challenged the sustainability of patient engagement. If companies, regulators and HTA bodies increasingly expect highly skilled patient experts to contribute to research and decision-making, this cannot depend solely on occasional advisory boards or one-year projects. Long-term investment in patient-expert capacity and sustainable patient organisations is necessary if we genuinely want patients to participate as equal partners.
This discussion flowed naturally into the dedicated Global Cardiovascular Disease Policy Forum, where FHEF and the Lp(a) International Task Force (ITF) joined the World Heart Federation, Global Heart Hub, Mended Hearts Europe, EACH and the Asia-Pacific Cardiovascular Disease Alliance. Each organisation shared its priorities and achievements.
For me, this was an important opportunity to present what has happened in Europe over the past few years—including the EU Safe Hearts Plan and the successful work by FHEF, EACH, and partners to strengthen the focus on cardiovascular health, early prevention, early detection and screening, including recognition of FH and elevated Lp(a). I also presented progress from the Lp(a) ITF, led by FHEF. Amgen participates in the ITF as an industry partner, represented by Victoria Tzouma as an industry observer.
One particularly encouraging moment was seeing that work originally developed through the European and international Lp(a) community is now travelling beyond Europe. The Brussels International Declaration on Lp(a) and the evidence on the cost-effectiveness of Lp(a) testing in primary prevention are increasingly being referenced by advocates in the United States. That is an important sign of growing awareness. Elevated Lp(a), until recently a relatively specialised topic, is moving into mainstream conversations around cardiovascular prevention and early detection.
The first formal day of the Summit was probably the most immediately practical for me. Richard Shotton’s keynote on behavioural science, followed by a smaller workshop, challenged a basic assumption that many of us in health advocacy make: if we give people enough good information, they will act. Often, they will not. His examples showed why communication needs to work with human behaviour rather than against it. Concrete language is more memorable than abstract language. Showing that others are already taking action can influence behaviour. Making participation visible matters. And individual human stories can sometimes motivate action more effectively than pages of statistics. That has obvious applications for FHEF. How do we encourage someone to have their cholesterol measured? How do we make Lp(a) testing normal? How do we mobilise people around a consultation or policy ask? How do we encourage compassionate giving and fundraising? The lesson was not to abandon evidence. It was to translate evidence into messages people can understand, remember and act on.
A second workshop, Engaging in Dynamic Times, led by Lynn Hanessian, prompted another useful realisation. What is one of FHEF’s most important strategic assets? Not a report. Not a website. Not even a project. Our community. The leaders of patient organisations and ambassadors across our network are informed, connected and—when there is a meaningful call to action—remarkably willing to act. That is an asset we need to use more strategically.
The session on Generative Engine Optimization (GEO) with Kristin Musselman brought another dimension. People are increasingly seeking health information not only through Google or social media but through AI-generated answers. For patient organisations this changes the challenge. Producing accurate information is no longer sufficient. We also need to make sure that information is structured, visible, findable, authoritative and trusted enough to be surfaced in new information environments. This is particularly important in inherited lipid disorders, where misinformation can easily fill the gaps left by limited awareness.
One aspect of the Summit deserves separate mention. I have attended many healthcare and industry events over the years, but rarely have I seen so many senior company leaders present and directly accessible to patient organisations over several days. The programme included discussions with Executive Vice President Murdo Gordon, senior research and medical leaders, business leaders across therapeutic areas and, informally, members of the company’s most senior leadership. That level of access is valuable—but only if patient organisations use it.
The point should not simply be networking. It should be the opportunity to ask difficult questions, challenge assumptions, explain where systems are failing patients and demonstrate what genuine partnership can achieve.
There is also an important cultural difference. The US healthcare and advocacy environment is not Europe. Patients have a different relationship with insurers, medicines and healthcare providers. Direct-to-consumer advertising makes medicines much more visible to the public. Elected politicians are often directly targeted by advocacy organisations. Questions of access and equity are very real, but they manifest differently.
There is a great deal European organisations can learn from US advocates: being more vocal, making policy asks more explicit, approaching elected policymakers directly and using lived experience confidently. But we should not simply copy the US model. Europe has different health systems, regulatory frameworks and traditions—and Europe itself is far from homogeneous. What works in one country may fail completely in another. There is also much we can share in the opposite direction. The Safe Hearts Plan is a good example of European patient and professional organisations working over several years to move cardiovascular health and prevention higher up the political agenda.
The final day produced perhaps my most important scientific reflection. A plenary moderated by Jennie Freibergs began in an unusually human way. Speakers introduced themselves using childhood photographs and explained how experiences from their early lives had influenced who they became and what motivated their professional work. It was a clever reminder that behind senior positions in research, health, advocacy and business sit very personal histories.
But the session that stayed with me most was Designing Equitable and Trustworthy Solutions, moderated by Amgen Chief Medical Officer Paul Burton, with Suna Avcil, Michelle Geller and Cameron McClure. The discussion touched on digital medicine, new approaches to clinical research and how technology may change evidence generation. It made me think about what I would call generational clinical trials in inherited lipid disorders. Within the same family, we may have a parent with FH or elevated Lp(a) who has already experienced myocardial infarction, stents or bypass surgery and a child with the same inherited risk who was detected early and may never develop clinical cardiovascular disease. Biologically related. Potentially carrying the same inherited risk. But living fundamentally different patient journeys. One is being treated after disease has developed. The other may be living a completely normal life while managing a cardiovascular risk factor from childhood.
As our advocacy succeeds in moving detection earlier, this becomes more than a theoretical issue. Will clinical trials designed around established cardiovascular disease remain sufficient? Are the traditional endpoints still the right endpoints? How do we demonstrate benefit in people whose success should be measured partly by the cardiovascular events they never experience? Industry needs to be preparing now for a greater focus on primary prevention. Earlier detection will eventually require different research questions, different populations, potentially longer follow-up and more thoughtful endpoints. If our goal is to preserve cardiovascular health rather than wait for disease, research must evolve accordingly.
Before leaving for the airport, I joined the final cardiovascular workshop with US patient advocacy colleagues, including Holly Paige from the Family Heart Foundation and many new and familiar peers. It was a fitting way to finish.
There is a great deal we can learn from one another, a great deal we can share, and significant room for collaboration.
Across four days, several messages became clearer for me:
For FHEF, the Summit was therefore strategically valuable not because we agreed with everything we heard, nor because every US approach is applicable to Europe. Its value was in having four days to connect, listen, present our work, demonstrate what collaboration can achieve—including through FHEF and the Lp(a) ITF—and directly challenge some of the people shaping research, policy, access and patient engagement within one of our industry partners. That is what meaningful stakeholder engagement should allow.
The real measure, of course, is whether the insights will meet the desired impact.
July was a month of preparation, advocacy, and momentum across the FH Europe Foundation network, with major developments in screening policy, rare disease recognition, precision medicine, and emerging treatment options. As the community prepares for FH Awareness Day, EU Screening Week, and key international events, efforts continue to advance early detection, patient empowerment, and equitable access to care for inherited lipid disorders.
Catch up on the key highlights from the July 2026 edition of Heart Beat:
The European Commission is preparing the first EU Screening Week, planned for 29 September–4 October 2026. Linked to World Heart Day, the EU Safe Hearts Plan and the Know Your Numbers campaign, the initiative aims to create a visible Europe-wide moment for prevention, screening and early detection.
The central message is simple: people should know important health numbers, including blood pressure, cholesterol and blood sugar, and be empowered to take preventive action before disease develops. The Commission hopes to mobilise activities in as many EU Member States as possible and establish EU Screening Week as an annual European initiative.
This is an important and timely opportunity for the inherited lipid disorders community. EU Screening Week begins only five days after FH Awareness Day on 24 September, creating a natural bridge between awareness of inherited cardiovascular risk and wider European action on prevention.
Why this matters for our community
The EU Safe Hearts Plan is built around three pillars: prevention, early detection and screening, treatment and care, including rehabilitation.
Importantly for our community, the Plan explicitly recognises familial hypercholesterolaemia (FH) and elevated lipoprotein(a) [Lp(a)] as inherited and severely underdiagnosed cardiovascular risk factors. It recognises the particular relevance of screening inherited conditions in children and young people and commits the European Commission to supporting Member States with FH early-detection and screening initiatives.
The Plan also specifically references the EU-funded PERFECTO FH and FH-EARLY projects.
This recognition matters because inherited lipid disorders are present from birth. Healthy lifestyles remain essential, but they cannot identify or remove inherited risk. Early lipid testing can identify affected children before symptoms appear, while cascade and reverse-cascade screening can identify parents, siblings and other relatives who may also be at risk.
EU Screening Week therefore offers an important opportunity to demonstrate that cardiovascular prevention must be life-course, personalised and family-based, not limited to adult health checks after decades of avoidable exposure to high cholesterol.
How can organisations take part?
Participation is intended to be broad and practical. Activities may include:
This means your organisation does not need to create an entirely new screening programme. Existing initiatives can be connected to EU Screening Week when they support prevention, early detection, health literacy and the objectives of the Safe Hearts Plan.
The Commission is preparing a central registration mechanism through which participating organisations will be able to provide information about their country, location and planned activities. A common visual identity and campaign toolkit are also expected, including logos, visual materials, templates, suggested messages and social media assets.
Participating activities may be mapped and promoted through European Commission communications channels. FH Europe Foundation will share the registration information and campaign materials with its Network as soon as they become formally available.
From consultation to implementation
FH Europe Foundation and its Network have contributed throughout the development of the Safe Hearts Plan and the future European cardiovascular health-check framework.
Our policy input has brought together evidence and recommendations from FH Europe Foundation, PERFECTO, FH-EARLY, PerMed FH, the Lp(a) International Task Force, patient organisations of the Network and individual Ambassadors, scientific and clinical experts.
Through the 2025 consultation on the overall EU cardiovascular health plan and the 2026 Call for Evidence on cardiovascular health checks, we advocated for:
We also highlighted opportunities to create synergies with early screening for other childhood conditions, including presymptomatic type 1 diabetes, through coordinated childhood health checks.
Evidence from PERFECTO was particularly important in demonstrating that screening is not simply a laboratory test. Successful programmes also require trusted communication, family and community engagement, support in navigating healthcare systems and deliberate action to address inequalities.
FH-EARLY is developing new approaches for earlier and more affordable diagnosis, risk stratification and precision prevention. The Brussels International Declaration on Lp(a) Testing and Management provides an additional roadmap for integrating systematic Lp(a) testing into cardiovascular prevention.
Momentum across the FH Europe Foundation Network
The European initiative comes against a backdrop of significant progress across the wider FHEF Network. Patient organisations, scientific societies, clinicians and national groups are increasingly advocating for better screening and stronger national cardiovascular health plans and strategies.
The response of the FHEF community to the European Commission’s consultation was remarkable. Patient organisations, Patient Ambassadors, clinicians, researchers and community advocates submitted feedback and contacted national decision-makers.
Following our call to action, advocacy letters were sent to Ministries of Health and policymakers in Austria, Cyprus, Germany, Greece, Ireland, Romania and the Netherlands.
The shared message was clear: inherited cardiovascular risk must be detected early, including through screening in childhood and preferably during the first decade of life. Read more about the community response.
This mobilisation helped move the discussion beyond conventional adult cardiovascular risk assessment. It reinforced the need to identify FH, HoFH, elevated Lp(a), FCS (familial chylomicronaemia syndrome) and other inherited lipid disorders before irreversible vascular damage or a cardiovascular event occurs.
France: a landmark achievement
On 20 July 2026, France promulgated a new law establishing a national strategy to prevent cardiovascular and neurovascular diseases.
Crucially, the legislation provides for an early screening appointment during the year following a child’s sixth birthday, including screening for familial hypercholesterolaemia.
This is an outstanding achievement for ANHET.f, the French FH and Lp(a) patient organisation and member of the FHEF Network, following more than a decade of evidence-based advocacy for universal early cholesterol screening.
The French development demonstrates how European ambitions for prevention can be translated into concrete national policy. Read the adopted French legislation.
New European scientific guidance
In May 2026, the European Atherosclerosis Society (EAS) published two major consensus statements. The updated consensus on FH in children and adolescents calls for paediatric screening programmes, revised diagnostic criteria, earlier treatment and Lp(a) measurement in children with suspected FH. The second consensus provides practical guidance on how lipid clinics and national lipid-clinic networks should be organised and funded, including staffing, registries, referral pathways, education and quality standards. Together, these publications connect early identification in childhood with the specialist services required to provide effective lifelong care.
Read the FH Europe Foundation overview of both consensus statements.
Luxembourg: translating experience into national screening
Luxembourg has introduced a free national FH screening programme for children aged 18 months, with cascade screening offered to first-degree relatives when a child is identified with FH. Additional pilot study, EARLIE, evaluated universal paediatric screening during school medical visits in Luxembourg. Among 1,860 participating children, capillary lipid testing identified three genetically confirmed cases of familial hypercholesterolaemia. Reverse cascade screening then uncovered five additional affected family members.
The screening offer and finger-prick test were well accepted, with only 1.6% of participating children declining blood sampling. However, half of the children with highly suspicious LDL cholesterol levels did not complete further assessment.
This finding highlights a crucial lesson: screening does not end with the test. Caregiver involvement, clear communication, and an effective follow-up pathway are essential to turn early detection into lifelong CVD prevention.
Read about the Luxembourg national screening programme and the practical lessons from the EARLIE pilot study here: https://www.atherosclerosis-journal.com/article/S0021-9150(26)00204-2/fulltext
Austria: a life-course approach to lipid health
The new Austrian Lipid Consensus 2026, developed by 32 experts representing 15 medical societies, provides interdisciplinary recommendations covering prevention and treatment from childhood to older age. It places the early identification and modern management of FH, elevated Lp(a) and other lipid disorders within a practical national framework for lifelong cardiovascular prevention.
Read the FH Europe Foundation update on the Austrian Lipid Consensus and the scientific consensus publication.
What happens next?
In response to EU Screening Week, FHEF together with the leaders of the EAS, Lp(a) International Task Force and the EAS FHSC – the Global FH Reigstry, has written to the Cabinet of European Commissioner for Health and Animal Welfare Olivér Várhelyi, offering practical support and collaboration around EU Screening Week.
We have proposed connecting the initiative with FH Awareness Day on 24 September. We have also invited the Commissioner to engage directly with young people living with FH and their families, connecting European policy with the everyday realities of people affected by inherited cardiovascular risk.
Furthermore, has adapted its FH Awareness Day 2026 programme and will launch a practical three-part webinar series. The webinars will help the community understand:
Dedicated community calls will take place on 18 and 25 August to introduce the campaign, explain how activities can qualify and clarify how members can participate in EU Screening Week.
We encourage all our Network members, Patient Ambassadors, friends, partners and supporters to take part by organising or promoting relevant activities—from webinars and awareness campaigns to community health checks and screening events—and by registering eligible initiatives through the European Commission platform once it opens.
One week. Millions of Europeans. One simple action for their health.
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